Remarks to the Ryan White CARE Act All-Grantee Meeting

by HRSA Administrator Elizabeth M. Duke

August 28, 2006
Washington, D.C.

Good morning. I am so happy to see all of you today. It's a wonderful morning when we can all get up, see that sun shining, recognizing that we have good work to do. A good life is one with good work in my definition. And so we know we have a good life because we have a lot of good work to do here.

It's been a real pleasure to see so many friends that I've made over these years and I welcome all of you as well as new friends that we will get to know during this session.

The work you do is really extraordinary. I feel very lucky to be part of this community and I thank you so very much for allowing me to be part of it and for being part of it yourselves.

It's hard to know whether you celebrate a 15-year anniversary of this type, but I think we do. I think we celebrate everything good in life. And this is a good thing we are doing. So let's celebrate it. Let's celebrate the fact that together we make a difference. There is a definition of the good life that says you get up, you put on your shoes, and you go to work and make a difference and that's what you do. So I thank you for that. I thank you for that personally and I thank you from a grateful nation.

We come together because we have an opportunity to learn from each other, to share, to set goals, and then to work hard to achieve them. We get together to rededicate ourselves to the vital work we do together. And we also gather to remind ourselves in the midst of the suffering that we struggle to ease that good works are still present in this very challenging world we're part of. Good works are found every day in the communities you're part of because of the programs you run.

I know several of you saw ABC's news special last week on AIDS in Black America. I think sometimes in that program, they skipped over some of the good works that are actually happening and maybe they don't know about the good works, but my communications staff and I are going to make sure they learn.

We know that you serve over a half million people with HIV/AIDS every year.

We know that more than half of those people, 52 percent of them, are African American. And we know that another 25 percent of them are Hispanic. And we know that a third of them are women.

We know that you go where the disease is. You follow that disease, you make a difference. We are making a difference and I thank you from the bottom of my heart. And we will try to make sure that America knows that we're there, that you're there and that we are making a difference.

Today, as the film clip showed you at the beginning, we all remember an Indiana teenager who really still inspires us today. I know it caught me off guard. My gosh, I was a lot younger and to see him on that screen really touched my heart and I know it did yours. He set us an example of tolerance and determination and he tried to bring out the best in his fellow man. Of course, he helped to lay the foundation for the program that we work on together today.

We are very, very proud to have Ryan's mother Jeanne White-Ginder here with us today. Jeanne is right here at the first table. I would like you to recognize her. She has been with us for every meeting. Thank you, Jeanne. It's such a pleasure to be able to share the event with Jeanne and to have her recognized through all of you that Ryan's legacy lives on.

I want to take another moment of your time just to recognize some very special people that I have the pleasure of working with every day. That's our HIV/AIDS Bureau at HRSA led by associate administrator Deborah Parham and deputy associate administrator Laura Cheever. I am very proud of our HAB staff and I would like you to help me recognize all of them here this morning. Please stand and let us recognize you. Thank you all so very much.

You know it's hard in a big building like Parklawn to literally get around and say thank you personally to everybody every day, but it is my pleasure to work with you and I take encouragement and inspiration from each and every one of you.

Deborah will be talking after I finish this morning. She is going to talk very specifically about the many successes under the CARE act and I'm going to talk today about some other things we're doing in HRSA to try to make life better.

I'm going to talk about the vital role of health information technology in improving the delivery of healthcare. I'll talk about some of the SPNS grantees who have really made some significant advances in those programs. I'm also going to talk about the best way for health professionals to volunteer for emergency services. I'll talk about the gains we've made in improving HIV/AIDS care along the U.S.-Mexico border. I'll talk about our commitment to oral health and also about our budget request, and about reauthorization.

Starting with health information technology, I was specifically reminded by my blackberry, which is telling of the progress of Ernesto. That's our next hurricane and so far he seems to be moderating a bit. But of course it brought back some pretty bad memories because it was, as you remember, just a year ago tomorrow that Hurricane Katrina hit the Gulf Coast and Rita came along just a few days later.

In the aftermath of Katrina, HIV/AIDS programs in 15 states and the District of Columbia really rose to the occasion and served over 1,500 evacuees from the Gulf Coast. People running those states' ADAP programs did whatever they had to do to serve those evacuees. They made emergency enrollments, they wrote prescriptions, they honored prescriptions written elsewhere, and they worked with pharmaceutical companies to obtain donated medications. The assistance was absolutely critical because we could not allow those patients to have a gap in drug treatment which could possibly cause a downward spiral in their well-being. Ultimately we had a job to do and we did it.

I want you to recognize that was really extraordinary. Because, you know, everyone says bureaucracy sets in and we can't do anything extraordinary. We can't be flexible. Well, we were flexible. We were flexible in the face of some very tough realities. Those realities were that our evacuees came to us with absolutely nothing. They came with no medical papers, no prescriptions, no evidence of their current treatment, no way to verify their treatment except by going through initial screenings under the most chaotic of circumstances. And yet, our grantees rose to the occasion. They conveyed the kind of commitment and the kind of service that all of us can take faith that there is goodness in humanity and that life can be better because of what we do.

But it also taught us something. It taught us that the development of health information strategies was absolutely essential for our safety-net providers. This is an absolute commitment of mine. We have been working on developing a strategy for HIT across HRSA because we realize that the need for electronic medical records is something that, if we can achieve it, we will never find ourselves in that situation again where evacuees are literally at the mercy of fate. And we will make a difference with our HIT commitment.

The HIT commitment is also a commitment of Secretary Leavitt's. His view is that the value of information and technology can not only improve the quality of healthcare in the management of disease, but it can lead to better informed health decisions by individuals, it can prevent errors, and it can reduce costs and improve quality at the same time.
Secretary Leavitt is in charge of the Office of the National Coordinator, which is committed to producing electronic medical records within 10 years across the entire economy.

We followed suit at HRSA and this year we created our first Office of Health Information Technology, headed by Cheryl Austein Casnoff. She is making a difference for us by leading us and giving information through us to our grantees about ways to proceed so that we don't all reinvent the wheel and spend money and time in a useless fashion. We believe that working together we can make that dream come true. And part of it, you all are already ahead on because in 2002, we launched six SPNS grants - you know, Special Projects of National and Regional Significance. These projects addressed the use of HIT in our program here, but we believe that they can make a difference across all HRSA programs and really through the medical economy at large.

I'll illustrate with just a few of those. We have two projects at Cornell and at Johns Hopkins that measure the effectiveness of audio computer-assisted self-interviews. These are designed to improve communication between providers and patients. The goal is that medication adherence will be increased and the quality of life improved. That's a really worthwhile goal and one where the commitment of relatively few resources produces outcomes well beyond what we could hope for.

The other four projects involve the use of decision-support systems. Those include the electronic medical records I talked about a moment ago and interactive Internet database development. One of those four projects, at Louisiana State University, is implementing electronic tracking and reporting system for outpatient clinics of public hospitals. And here physicians and nurses and other providers use the system to access laboratory and diagnostic and medication data. This system was instrumental in managing and retrieving patient records after Katrina. So there is a real immediate payoff on that investment.

Dr. Michael Kaiser, LSU's project director, is with us today. He played a pivotal role in coordinating the care for the patients in the wake of Katrina and Rita. He continues to coordinate that recovery effort in the public hospitals and that system in Louisiana is the fourth largest in the country. We are very proud of him because he is one of us. Michael headed our CARE Act Title IV program before he went to Louisiana. He and six others will be honored as outstanding HIV/AIDS providers at our award ceremony tomorrow, so I hope you will recognize him and give him a round of special applause at that time.

Another thing I would like to tell you about is a program that has the worse acronym in government. You know in the government any program gets a name, then it gets the name shortened to some kind of an abbreviation. That acronym then becomes a noun and sometimes even a verb, which drives you nuts. Well, this is truly the worst one, it's called ESAR-VHP - the Emergency System for Advance Registration of Volunteer Health Professionals. What it is is something really worthwhile and it goes to what I said over the years, that good people work in our programs and they want to reach out and help in emergencies. And in an emergency, there are issues around credentialing and other nitty-gritties of the service world.

What we've done at the request of the Congress is to set up a program that allows for advance registration. Through that advance registration, when you choose to volunteer your state already has cleared all of the necessary credentials, licensing, and malpractice coverage issues so that you can literally go to the emergency and serve to the fullest of your capacity. This system is run with federal support at the state level. So the best way you can volunteer to help in emergencies is to get with your ESAR-VHP rep in your state, register with them, and then be part of the state response when you go into an emergency. If you don't know who your ESAR-VHP is in your state, ask your project officer in HAB to point you in the right direction, and we can help facilitate that for you.

The reason this is so important is that you know there is chaos in an emergency. You remember that from our pictures of Katrina last year. This way the volunteer system is organized. The interests of the recipients as well as the interests of the volunteers are well protected. The states will know who is coming to help them, what skills are coming so that they can ensure that the skills get put into the places where they're most needed. We are very pleased to say that we have 13 states fully up and running on ESAR-VHP and seven are just about up and running.

Now having said that, you can tell that I'm very impatient that we don't have 50 up and running. But we already have a good story to tell you. Last year our ESAR-VHP system registered and sent to the Gulf area 8,300 health professionals, more than any other system. We processed that many in the very first year of the program. That is pretty amazing. We are actually better off this year and next year we'll be further. So please be part of that system. We believe that it is a big step forward.

Another issue that has been a real priority of mine has been improving healthcare along the U.S.-Mexico border. If that area were a state - and that's that 2,200 mile border from California to South Texas - if it were a state it would have the absolute worse health outcome statistics in the entire nation. I believe we can do a better job there and I believe we need to do so. Last week I was in Tucson at a border health summit to work with grantees and build some partnerships. We have been at that since 2002. We believe we have made some progress but we know we can do better and here again, our HRSA SPNS grantees have led the way. We had five five-year projects that ended last year to our grantees along the border. They were charged with finding ways to reduce barriers to care, to increase early detection of HIV in patients, and to ensure access to comprehensive care along the border.

Well, we looked at the evaluations of those programs and I could take an hour just talking about the findings, but I'll just share a few with you. The evaluations show that we learn that we can do a far better job if we use the community health workers, the promotoras, to engage local residents in a culturally competent way to get folks into care and keep them in care. We found that the huge border area is an issue of distances and that the need for transportation services is incredibly significant for our patients in that area.

We also found that we needed to develop better working relationships across the border, because the border is very porous and people come and go across it.

Another thing we have been working is improving oral health care. That's been a passion of mine in this job from day one. I've said for a long time that the way to recognize the difference between the rich and the poor in America is very simple: you just look in their mouths. We can do a far better job. Good oral health is a key to good health overall. And we know the importance of good oral healthcare in HIV. Oral health problems many times are the first symptoms of HIV infection and later they often point to clinical regression. So periodontal disease is a significant problem for us and one that we fight very hard. The access to early and adequate oral healthcare is something we care deeply about in our program.

You know for many years we have funded the dental reimbursement program, an innovative approach which ensures that low-income patients will have access to high-quality dental healthcare when they need it. This year 16 new SPNS grantees, part of a five-year oral health initiative, will begin testing the very best ways to get oral health services to our HIV-positive population. We are going to be putting those grants in areas where there is no oral health care or very inadequate oral health care.

Those grants will be announced later this week. I'm really proud of this undertaking and I salute my colleagues in HAB for helping make this dream come true. I know that we can make difference.

You will also note that we have similar initiatives in our community health centers - many of which are also Ryan White grantees - so we believe we are going to get some synergy from the Ryan White grantees and the community health center grantees to ensure that we have improving oral health care for everyone. By any measure we have made progress in oral health but we know we can do a better job, so look to those grants, look to those SPNS projects, for ways to make a difference in our future.

I want to conclude with an update on where we are on Capitol Hill. You know we sent the President's budget to Capitol Hill for 2007 earlier in the year and that included a $95 million increase for the CARE Act, if approved - and I hope it will be. That would bring the program to a new high of $2.2 billion. Of the $95 million in our proposal, $70 million would go to resolve the problems of state waiting lists for the ADAP program. We know that the formula in the ADAP program sometimes is a challenge, so we believe that this $70 million could help with that waiting problem, which has been very significant. The other $25 million is for outreach by community and faith-based organizations into the communities around them. The funds will provide technical assistance and also money for sub-awards for grassroots organizations. We need to get people into care. It's for them, it's for the community. It is the right thing to do.

We also have a provision in the budget to give the Secretary flexibility to meet the needs where they are. That would allow him to transfer 5 percent of the funding from any title in the CARE Act to another title where it's needed.

Let me give you the view of an old budgeteer. When they start saying you've worked for five secretaries, you know you've been around a long time. I've done a lot of budgets. I like budgets. Budgets are the way you get things done in this country. Money is a proxy for action. 2006 was a really rough year for HRSA. Ten of our programs were totally eliminated in 2006. And seven other of our programs were very significantly cut. In the 2007 budget, most of our programs are held steady or reduced.
From where I sit, this $95 million increase is a very big deal. And it really shows the commitment of both ends of the avenue for the CARE Act and the bipartisan support that we have enjoyed up to this point and I believe we will continue to receive from the White House and from the Hill. So we are happy with that $95 million increase and we are optimistic about this appropriation cycle.

Now, reauthorization is also underway and we've been working from HRSA with the department and with the lawmakers on the Hill to reauthorize it since the day it expired on September 30. That is in process and I really can't give you a prediction of when that will actually come about, but in the meantime, we will continue to operate under the 2000 Act. The President has, on a lot of occasions, talked about his principles for reauthorization, including in his State of the Union message. Now I have to tell you that in Washington, getting a mention for a program in the State of the Union is a big deal. Your program was an automatic in the State of the Union. The President took great pride in including it in the State of the Union, and he talked about his principles for reauthorization. They are: to serve the neediest first; to focus on life-saving and life-extending services; to increase prevention; to increase accountability; and to increase flexibility. We'll stay tuned to see how that process goes. As I said, I can't give you a timeline, but I think we're on the right path.

I'm going to end by encouraging all of you to take full advantage of this wonderful week of programs. Steve has already told you the plethora of opportunities you have for learning and for sharing. The technical assistance is there for you and we hope you will avail yourself of it. The thing about this meeting is that we listened to you. We heard your requests and we structured a program we believe is responsive.

So what we ask of you is to roll up your sleeves and enjoy a wonderful learning experience with us and with each other. I thank you for your service to America. Your good work makes the world a better place. Thank you so very, very much and have a great conference.

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